Letter to Gov. Rauner: “You’re attacking those of us with the least in order to protect those with the most”

My name is K.L. Cleeton of Effingham and I am a 26 year old person with a disability. I have a condition called Spinal Muscular Atrophy (SMA) that is best understood as being something like completely paralyzed from the neck down, but with full and complete feeling. Because of this, I require 24-hour assistance for literally every aspect of my life. Everything from having an itch scratched and getting a drink to going the restroom and handling my personal care, is something I rely on completely and totally from my parents. Obviously, this level of required assistance wouldn’t be possible without the DORS Home Services Program.

This program is important beyond words in allowing me to maintain my independence. Not only am I able to remain in my home, but I’m able to remain in the care of the 2 people that know me better than anyone in the world ever possibly could; my parents. When even the littlest things like eating and drinking are difficult and become a choking hazard, having my parents as my personal assistants, all the time, is one of the most comforting thoughts in the world.

There are quite literally an infinite number of reasons why the demands you are making of Home Services consumers are completely and totally unreasonable, and I would be more than happy to have a conversation with you about what those specific reasons are. However, for this correspondence, let’s stick to one hypothetical. Imagine for a moment that you are me. You are unable to move your arms or legs. You are only working with about 18% of your lung capacity. Because of your disease, which by definition is significantly decreased muscle strength, you have serious difficulty swallowing, which makes drinking and eating more difficult. Your parents, the people who know you the best, are your personal assistants. But now, you’re being told that you have to give up that comforting thought, because your disability is severe enough that you require more hours per week than they are allowed to work. Can’t you see how you are punishing individuals with severe disabilities for the very fact that they have that disability? These limits take away my ability to control who cares for me. You may say, “You can still hire who you would like.” But that’s the issue… I have hired who I would like: my parents.

I am fully aware of the situation our state finds itself in. As a graduate from the University of Illinois, this fact does not escape me. However, you are asking the individuals who are the least able to shoulder this burden to do exactly that. You’re attacking those of us with the least in order to protect those with the most. Sir, in this situation, your policies fly directly in the face of your goal of “ making Illinois the most compassionate state in America.”

I implore you to reconsider your stance, and work with consumers and personal assistants to find a reasonable alternative for everyone involved. Also, before you have actually seen and experienced something firsthand, can you really make an informed decision about what the policies should be? I don’t think so, which is why I’d like to invite you down to Effingham to see what a day in the life of me is like.